Welcome to Alpha-1 Awareness, a UK Charity that Supports people with AATD

AATD or Alpha-1 Antitrypsin Deficiency is a lack of the protein alpha-1 antitrypsin (AAT) which is produced in the liver. The main job of AAT is to protect the lungs. A deficiency can lead to life-threatening lung and/or liver disease.

The first signs and symptoms of lung disease caused by alpha-1 antitrypsin deficiency usually appear between ages 20 and 50.
The symptoms are:

  • shortness of breath following mild activity
  • reduced ability to exercise
  • wheezing

About ten percent of infants with the deficiency show signs of liver damage at birth. Fifteen percent of adult Alphas also develop liver disease.

Only a small fraction of alpha-1 antitrypsin deficient patients in the United Kingdom are aware of the causes of their condition.

Our charity is run by non-paid volunteers who all are either affected by Alpha-1 or have a family member who is. We all have a connection to Alpha-1 and this isn’t our day job. We have a real passion for the charity and for supporting people who are affected, their families and friends.

This website was created so that people can learn more about Alpha-1 and how to get support.  We produce our own booklets which people can download and view digitally (click here) and even request that a set be sent to them in the post for free. We have a private Facebook Group where we help to support people in a safe environment. If you would prefer one on one support, then you can email us directly on ‘support@alpha1.uk‘ or use our Contacts Us Form. We care, we want to help those affected, their families and their friends. We are also proud to be the only UK charity that is donating money to go directly to the research of a cure.


Charity to close

16th September 2021

After much debate and a considerable amount of time and thought, it is with great sadness we must announce that the Alpha-1 Awareness charity will not be continuing.  As of the 26th September 2021 we will be dissolving.

Given the above circumstance the AGM that was planned for the 25th will no longer go ahead.

 

Unfortunately, we have not been able to fill the chair role, with everyone on the board being volunteers and many having full time jobs and other commitments, it has not been possible for any of us to take on that position.  I know I speak for all the board when I say we truly wish we were able to continue, but we would not be giving it the time and effort it deserves.

 

We would like to thank all fundraisers and supporters past and present who have helped raise money to this charity whether it be large or small.  All the remaining charity funds will be going towards research in the hope to find that illusive cure.

 

We are, however, going to keep the Facebook group running  (it can be found here: https://www.facebook.com/groups/alpha1awarenessuk), as we still wish to offer all our members support within a safe environment. The group is more like an extended family and we would hope that many of our ‘family members’ will continue on with us.

 

We are truly sorry that we have to let the charity close, it feels like the end of an era, but please know that we will still be here to support you.

 

From all of us on the Board


 Latest News

 

Great River Race

Alpha-1 Awareness is supporting the Great River Race.  Two teams of rowers competing in the event will be wearing our livery to raise awareness of the genetic condition.  The six-oar boats are Thames Waterman’s Cutters most of which are owned b
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New Board Members

For many years Andi and Jackie Osborn have come to Alpha-1 Awareness meetings and they have helped raise money for the charity.  It gives us great pleasure to announce that now they have agreed to join the Board of the charity.  Their opinions and pr
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RAPID Trial Results Announced

Treatment with augmentation therapy is effective in slowing the progression of emphysema in patients with alpha-1 antitrypsin deficiency (AATD), according to a new study presented at the 2013 American Thoracic Society International Conference in Phil
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Alpha-1 Awareness UK online charity shop officially launched

Fantastic News! Our brand new Alpha-1 Awareness UK online shop www.alpha1shop.org.uk is now officially up and running! We’ve a range of fantastic products that will help to raise money for the charity and enable us to keep fighting for Alphas i
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News from Alpha 1 Alliance on Grifols and future of UK Prolastin

We have received the following press-release today from the Alpha-1 Alliance (of which the Alpha 1 Awareness UK charity is a part). The statement says:  
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Bobby’s Story

My daddy died when I was 3 years old. I remember him really well from our home in Ashby-de-la-Zouch. I remember playing with him and him telling me things that were really interesting. It makes me sad that he is not here anymore to enjoy stuff with m
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AAW Board Member Dies

Wendy Rogerson died in her partner’s arms at their home in Bristol in the early hours of Friday.  Wendy was a member of the board of Alpha 1 Awareness UK.  Her special field was assisting people with the complexities of Disable Living Allowance
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Alpha-1 Alliance – campaign update

The Alpha-1 Alliance is campaigning for a highly specialised service within the NHS for patients with severe Alpha-1 antitrypsin deficiency.  We’re calling on the NHS to set up three or four specialist Alpha-1 centres in hospitals across England that
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This website is run by Alphas and their carers. We do our very best to ensure that all information shown here is up-to-date and accurate. However, you should always consult your own GP or other medical professional if you have the slightest concerns about your health.